ESOT started building a platform to host pan-European registries in January 2021, leveraging on the experience of its section ELITA which had been successfully coordinating the European Liver Transplant Registry since 1985. The platform was thought of as modular, scalable and able to receive information on different organ transplants: a one-stop solution for European national and local authorities to contribute data and share practice with the community.
- January 2021: Launch of the project
- February 2021: The EPITR scientific committee start work on the development of a pancreas and islets transplant registry
- December 2021: Dendrite Clinical System is selected as the technical partner to design, develop and implement the platform
- April 2022: the ESOT Council approves the Governance of the registries project
- April 2022: 1st General Assembly
In September 2023, the Committee of Ministers of the Council of Europe issued recommandation to member States on establishing national harmonised organ transplant registries with a view to facilitating international data sharing. In particular it recommends that the governments of member States promote the development and maintenance of national transplant registries with a view to facilitating harmonisation of the said registries and international data sharing. ESOT welcomes this recommendation and glady makes its registries platform available to transplantation centers, competent authorities and ministers.
ESOT is a member of the European Health Coalition, a network that aspires to health and care systems centered on people and patients. To make this vision a reality, the European Health Coalition has put forward nine recommendations focusing 4 priority areas (Digital transformation, Health system integration, Boosting research and innovation, Access to innovation). The ESOT registries are in line with all these recommendations, particularly the following ones concerning data and digital health:
- Enable the collection of standardised, high quality and relevant health data in a secure manner to improve healthcare delivery, enhance research and drive greater efficiency of healthcare system.
- Build a positive ecosystem fostering greater coordination and collaboration on Artificial Intelligence across the EU, and between different disciplines, to enhance the trustworthy and ethical use of AI in healthcare.
The ESOT registry platform will serve a variety of stakeholders, including competent national authorities, national/regional/local transplant registries, national and international scientific review committees, transplant centres and individual professionals, patients and donors (families), and the general public. To take into consideration all voices of the transplant community, the ESOT Council has put much effort into establishing an inclusive governance of the registry project.
- The General Assembly represents data contributors and acts as an advisory body. It ensures that the registries can comply with the existing legal, scientific and ethical regulations, and it advises the Steering Committee on developing the strategy and establishing new registries.
- The Steering Committee is responsible for developing the strategy of the ESOT registries platform and submitting it to the General Assembly. It promotes the registries platform and invites new registries contributing members to the General Assembly. It supervises the budget and finances, and reports to the General Assembly.
- The Scientific Committees are composed of renowned professionals in the field of transplantation. They are responsible for defining the set of variables to collect and the expected outcomes of the registry. A scientific committee is created as soon as the Steering Committee approves the proposal for a new registry.
Read more about the Governance of the ESOT Registries platform
ESOT raises funds according to the strategy agreed upon by the Steering Committee with the aim of maintaining the technical infrastructure, providing technical support for users of the registries and widening contacts with participating or interested parties, scientific consortia, the industry and patient associations.
In agreement with its bylaws (Art. 7), ESOT calls for donations, sponsorship contributions, inheritances and legacies to support the registries platform project.
Download the Registries sponsor brochure